What is Cervical Dystonia?

Neck Involuntary Movements: If your neck is pulling how to help yourself

 

If you are experiencing neck tension that is lasting way longer than your physical therapist was expecting, if you are feeling frustrated that your symptoms are not getting better, but are getting worse with therapy, if you feel that your Physical Therapist, Chiropractor or Osteopath do not know how to help you because your symptoms are different than those produced by poor posture, poor sleep position, teeth grinding or using the computer for long hours, if your symptoms first appeared suddenly without a clear mechanical cause, this post may enable you to find the help that you need.

The first piece of advice I would give to you: If conventional treatment for muscle tension is not helping, you feel that you are getting worse, and the neck spasms and neck tension is affecting your quality of life, please consider the possibility that you could be dealing with a condition that is neurological in nature.

As of this writing in 2023, most Physical Therapists, Chiropractors and Osteopaths have not received enough training on how to treat and spot neurological conditions that affect movement and muscle control (movement disorders). It is estimated that there are 300,000 people affected by Cervical Dystonia worldwide. Cervical Dystonia is a neurological movement disorder that produces tension in the neck, neck pulling, pain in the shoulder and involuntary movements of the neck. When their symptoms first begin the vast majority of patients seek professional help, but their therapists treat the symptoms without success because they consider them to be structural or muscular in nature and are unaware of the neurological cause. I understand that neurological conditions are deceiving, because a brain imbalance can produce neck tension and it seems like resolving the neck tension is the right thing to do, when in fact restoring balance in the brain is the only option that will work.

The main problem of a misdiagnosis of these symptoms is the patient loses precious time that should be invested in their rehabilitation. They can spend large sums of money in treatments that are not adapted to their needs, making them feel frustrated that they have tried everything and nothing works.

In 2023, the average time a patient affected by Cervical Dystonia (also called Spasmodic Torticollis) will wait to receive a proper diagnosis and start receiving much needed Neuro-Rehabilitation is 10 years!

We can do better, therapists can learn to spot the initial symptoms, patients can be sent to a neurologist to receive an early diagnosis and start a specific Neuro-Rehabilitation protocol as soon as possible.

How to determine if your neck symptoms are neurological or muscular

If your neck tension is muscular in nature:

• You will feel much better after a massage session
•  Physical therapist sessions will decrease your symptoms, reducing your pain and increasing your mobility after the session. Improvements will last and you will gradually feel better in a few weeks. A physical therapy session once a week will resolve your tension in a period of time between one week and 6 weeks.
• Stretching will reduce your tension
• Your muscle tension will be quite stable during the day and will fluctuate little, no matter where you are.
• You will just feel muscle tension but no additional symptoms such as tremors, nausea, migraines, dizziness, tiredness
• You will feel tension in the neck but no involuntary pulling or movements.
• Your tension will not interfere with your balance or your ability to walk

If your neck tension is neurological in nature:

• You will feel slightly better after a massage session but the relief will last less than an hour, sometimes minutes
•  Conventional Physical therapy may increase your symptoms, increasing your pain and not improving your mobility after the session.  A physical therapy session once a week for 6 weeks will not make a difference and you may feel you are getting worse. This is the moment to visit a neurologist.
• Stretching will not reduce your tension and will increase your pulling if not done properly
• Your muscle tension will fluctuate during the day, symptoms can suddenly increase if you are in public, stressed, or you did not sleep well. Symptoms may suddenly reduce when you are alone, dancing, relaxing or you had a cup of wine.
• You may notice additional neurological symptoms such as tremors, nausea, migraines, dizziness, tiredness, vision issues.
• You may experience neck pulling to the right, neck pulling to the left, neck fixed in a position and you cannot voluntarily change it. Neck and shoulder pain and tension may also be felt. Sudden tremors, jerks and twitches of the neck may be felt during the day.
• Your symptoms may start as mild neck tension and get worse over time leading you to experience fixed postures, neck spasms, and involuntary motions in the neck or shoulder.
• Your tension may interfere with your balance and your ability to walk

If your condition is neurological in nature, it would be normal that your symptoms suddenly appeared just after a period of exhaustion, stress, emotional trauma, a surgical operation, mild concussion, after Covid 19, after infection or after receiving a vaccine or starting a new drug (antidepressants, antipsychotics).

Seek a proper diagnosis at your neurologist’s office

This is very important, there are many different neurological conditions that can produce muscle tension in your neck and determining which one is affecting you is paramount. If you suspect cervical dystonia based on these symptoms, seeking a medical evaluation is crucial. Neurologists and movement disorder specialists are typically involved in the diagnosis process. They may conduct a thorough examination, including assessing your medical history and performing neurological tests. A good differential diagnosis is the best way to start receiving the treatment you need. Do not underestimate the importance of a proper diagnosis. A study conducted over 1,071 patients in 38 countries, showed that 66% of patients affected by Cervical Dystonia were misdiagnosed at first,  producing enormous stress for the patient and also delaying the opportunity to receive proper specific treatment for their condition.

What Causes Involuntary Neck Twitching?

Cervical dystonia manifests itself through involuntary muscle contractions in the neck. When these contractions occur, the muscles tighten and struggle to relax, leading to abnormal movements resembling spasms or jerks. This condition significantly affects posture, causing the head and neck to engage in irregular movements.

Cervical dystonia represents a localized, or focal manifestation of the broader neurological disorder known as dystonia. As a prevalent movement disorder, cervical dystonia primarily targets the muscles of the head and neck. The hallmark of this condition is the occurrence of involuntary contractures or muscle activations in the neck, resulting in various abnormal postures.

These postures can involve twisting or turning of the neck, pulling the head back, rotating it to one side, tilting it to one side, or even pulling it forward. The diversity of these manifestations underscores the complexity and variability of cervical dystonia, making it crucial for individuals to recognise the symptoms and seek timely medical attention and early diagnosis.

Cervical Dystonia Specific Symptoms:

You may feel just one, some or all of these symptoms to a greater or lesser degree. It’s also important to note that every single patient’s case will differ in the intensity of those symptoms.

1. Involuntary Movements and Twitching

One of the primary symptoms of cervical dystonia is the presence of involuntary movements in the neck. These can range from subtle twitching to more pronounced spasms or jerks. Observing these movements is often the first step in identifying the condition.

2. Pain and Tension in the Neck and Shoulders

Individuals with cervical dystonia commonly experience pain and tension in the affected areas, particularly the neck and shoulders. The continuous muscle contractions can lead to discomfort and, in some cases, chronic pain.

3. Restriction of Motion

A significant indicator of cervical dystonia is a decreased range of motion in the neck. Patients may find it challenging to move their neck freely, and certain postures may feel restrictive.

4. Neck Tremors

Tremors in the neck, characterized by rhythmic and involuntary shaking, are another distinctive symptom of cervical dystonia. These tremors can contribute to the overall difficulty in maintaining a stable head position.

5. Neck Pulling to the Right or Left

The asymmetrical nature of cervical dystonia often results in the head being pulled to one side, either to the right or left. This visible deviation from a normal head position is a key sign that clinicians use to diagnose the condition.

What are the most common treatments for Cervical Dystonia?

Treatment options for cervical dystonia vary and may include botulinum toxin injections, physical therapy (performed by a Physical Therapist with training in movement disorders), Neuroplasticity-based Neuro-rehabilitation and in some cases, surgical interventions. Early diagnosis and intervention can significantly improve the management of symptoms and enhance the quality of life for individuals living with cervical dystonia.

Unlocking Hope: Neurorehabilitation for Cervical Dystonia

As we navigate the intricate landscape of cervical dystonia, it’s imperative to shine a spotlight on the potential for recovery and improvement through Neuro-rehabilitation. Neuro-rehabilitation, a specialized form of therapy aimed at optimizing the nervous system’s function, holds promise for those grappling with the challenges of cervical dystonia.

The Importance of Early Intervention

Timing is Key: When it comes to Neuro-rehabilitation for cervical dystonia, the adage “the sooner, the better” resonates profoundly. Early intervention can play a pivotal role in shaping the trajectory of recovery. Initiating neuro-rehabilitation as soon as the diagnosis is confirmed is advised, as it provides the brain with an earlier opportunity to rewire and adapt.

Stimulating the Brain: Neuro-rehabilitation involves targeted exercises and therapies designed to stimulate the brain and promote neural plasticity. In the context of cervical dystonia, where abnormal muscle contractions disrupt normal movement patterns, neuro-rehabilitation becomes a beacon of hope.

Unleashing the Brain’s Potential

Recovery Options: The brain possesses an incredible capacity for adaptation and recovery. Engaging in neuro-rehabilitation early on maximizes the potential for the brain to reorganize itself, finding alternative pathways to control movement. This adaptability becomes a cornerstone for individuals with cervical dystonia, offering a spectrum of recovery options.

Holistic Approach: Neuro-rehabilitation for cervical dystonia is often a multidisciplinary endeavor. Physical therapists, occupational therapists, and sometimes speech therapists collaborate to tailor a comprehensive rehabilitation plan. This holistic approach addresses not only the physical aspects of the condition but also the broader impact on daily functioning and quality of life.

Partnering in the Recovery Journey

Patient-Centric Care: Neuro-rehabilitation is not a one-size-fits-all solution. Tailoring interventions to the specific needs and goals of each patient is essential. A patient-centric approach empowers individuals to actively participate in their recovery journey, fostering a sense of control and optimism.

Ongoing Support: Cervical dystonia is a condition that requires long-term management. Neuro-rehabilitation is not a quick fix but rather a process that unfolds over time. Ongoing support and regular adjustments to the rehabilitation plan ensure that the individual’s evolving needs are met.

Embracing Hope and Possibility

In conclusion, Neuro-rehabilitation emerges as a beacon of hope for individuals grappling with cervical dystonia. Starting this journey as soon as possible is not merely a suggestion but a strategic decision that opens doors to a spectrum of recovery options. By actively engaging the brain in the process of recovery, individuals can reclaim control over their movements and enhance their overall well-being.

Remember, the journey towards recovery is unique for each individual. With Neuro-rehabilitation as a guiding light, we pave the way for a future where the full potential of the brain is harnessed, offering renewed hope and possibilities for those affected by cervical dystonia.

What is Oromandibular Dystonia. Understanding Types and Coping Strategies

Oromandibular Dystonia Types

Jaw Dystonia

Jaw Dystonia involves involuntary contractions of the jaw muscles, leading to clenching, twisting, or opening of the jaw. This subtype can result in difficulties with chewing, speaking, and even maintaining a relaxed facial expression.

Tongue Dystonia

Tongue Dystonia manifests as involuntary movements or contractions of the tongue muscles. Individuals with this subtype may experience twisting or protruding of the tongue, impacting speech, swallowing, and oral functions.

Oromandibular Dystonia in Combination

In some cases, individuals may experience a combination of jaw and tongue involvement, leading to complex manifestations that affect various aspects of oral and facial movements.

Identifying the Signs of Oromandibular Dystonia

Recognition of the signs of Oromandibular Dystonia is crucial for early intervention. Signs may include involuntary muscle contractions in the jaw or tongue, difficulties in speaking, chewing, or maintaining facial expressions. Familiarity with these manifestations is key to proactive management.

Unraveling Causes and Triggers

Oromandibular Dystonia, much like other dystonias, can be influenced by genetic factors, environmental triggers, or secondary outcomes of other conditions. Understanding these factors provides insights into effective management and mitigation of the impact on daily life.

Navigating Diagnosis and Medical Strategies

Accurate diagnosis is paramount for developing targeted treatment plans. Delve into essential medical assessments and examinations confirming Oromandibular Dystonia. Explore a range of treatment options, including neuroplasticity-based rehabilitation, medications, and Botulinum toxin injections, to gain a comprehensive understanding of available interventions.

Adapting through Lifestyle Modifications and Coping Strategies

Beyond medical interventions, lifestyle adjustments and coping strategies play a significant role in managing Oromandibular Dystonia. From speech therapy to oral exercises for Oromandibular Dystonia, individuals can actively engage in their well-being, addressing the multifaceted aspects of living with Oromandibular Dystonia.

Conclusion

In conclusion, navigating the complexities of Oromandibular Dystonia requires awareness, understanding, and a proactive approach. By recognising symptoms, seeking timely intervention, and embracing holistic approaches, individuals can empower themselves for a more balanced and fulfilling life despite the challenges posed by Oromandibular Dystonia. Stay informed, stay proactive, and let’s navigate the intricacies of Oromandibular Dystonia together.

Understanding Task-Specific Focal Dystonia: A Comprehensive Guide

What is a Task-specific Focal Dystonia?

Task-specific Focal Hand Dystonia, a movement disorder, disrupts specific activities like writing, playing instruments, or engaging in sports. This condition is Characterised by involuntary muscle contractions, fingers curling involuntarily, tremors, and uncontrolled movements, it manifests as focal cramps or spasms in the hand, wrist, or forearm, impacting tasks like writing – a condition known as writer’s cramp.

Musicians face a similar challenge with Musician’s Dystonia, affecting various instruments. Focal hand dystonia hampers fine-motor control, reducing coordination and speed producing index finger spasms and hand spasms in the thumb. Woodwind or brass players may experience embouchure dystonia, causing cramps in the lips, tongue, or jaw during play. Over time, these conditions may extend beyond the instrument, affecting daily activities.

Sports enthusiasts aren’t exempt. Golfers might encounter “the yips,” involuntary wrist jerks during putting. Tennis players, billiards enthusiasts, and dart throwers may also experience hand and arm muscle spasms. Occupations involving repetitive movements, such as tailors, shoemakers, hair stylists, or frequent computer users, are susceptible to task-specific Focal Dystonia.

Despite being usually painless, the abnormal movements can induce anxiety, particularly for musicians, impacting performance. In severe cases, professional disability may ensue. Awareness and early intervention are crucial for managing task-specific focal dystonia, ensuring individuals can continue pursuing their professional carriers without compromise.

Decoding Task-Specific Focal Dystonia: Beyond Professions to Symptom Thresholds

Task-specific focal dystonia challenges individuals during specific activities, raising the question: are these challenges truly task-specific or rather symptom-specific? I would like to propose an alternative model, the symptoms’ threshold theory which may sheds light on this complexity.

My patients who are runners, for instance, may not exhibit symptoms until they surpass a minimum distance, challenging the dystonic deficit only under high-stress conditions. Similarly, musicians might remain symptom-free until playing fast passages, revealing symptoms associated with intensity rather than the task itself.

This theory extends to Brass players affected by lip dystonia, who may speak normally but show symptoms only when exerting the high tension necessary for playing instruments. The symptoms’ threshold theory proposes that it’s not the task but the intensity that unveils the dystonic deficit. For instance, a slight loss of muscle speed in the fingers may go unnoticed until attempting maximal speed. Likewise, a runner with task-specific leg dystonia might only feel the deficit during high-stress activities, like lifting weights or running long distances.

Under the symptoms’ threshold theory, individuals affected by Task-specific Focal Dystonias are essentially grappling with mild hand, leg, or lip dystonia—only categorised based on their respective activities.

For example, if a musician affected by a mild hand Dystonia has lost 5% of contraction speed in some fingers will not express symptoms unless tries to perform at maximal speed. A runner affected by mild leg dystonia who has lost 5% of contraction power in her quadriceps  will only feel her deficit when putting the leg in high stress by doing press with high weight or running a long distance. This model challenges traditional diagnostic labels tied to professions, like musician’s dystonia, Runners’ Dystonia or writer’s cramp. Instead, it advocates for a more unified approach, classifying patients based on the condition they exhibit and the intensity of their affliction.

This new alternative model not only simplifies research but also eliminates confusion arising from artificial sub-diagnoses. By understanding and addressing the symptoms’ threshold, we can reshape our approach to task-specific focal dystonia, providing a more accurate and comprehensive understanding of this intriguing movement disorder.

It is all in your head? Dystonia’s Journey: From Psychogenic Assumptions to Modern Challenges

Tracing Dystonia Through Time

Dystonia manifests in various forms, they are normally classified into Secondary dystonia (of known cause) and Primary Dystonias (of unknown cause or idiopathic). The difference between the two are still under research. Primary Dystonias have been considered a medical mistery for centuries and they have been explained through the light of different theories, ranging from pyschogenic models to modern structural and functional theories based on brain imaging.

Our historical journey spans back to the 19th century, examining medical texts and references to unveil the condition’s evolution.

The Influential Figures: Charcot and Freud

Jean-Martin Charcot and Sigmund Freud significantly shaped dystonia’s history. Charcot proposed the concept of hysteria, linking environmental factors with predisposition in disorder development. Freud introduced psychoanalysis as a therapy for psychic disorders. Their theories, coupled with the lack of an identified organic basis for dystonia, laid the groundwork for psychogenic explanations, leading to psychological diagnoses and treatments.

Shifting from Psychogenic to Organic

In the 1950s, the discovery of new hereditary cases marked a turning point. The limitations of psychotherapy in treating torsion dystonia, the success of surgical interventions, and lesion studies in the 1960s bolstered the consensus in favor of an organic nature. The pivotal moment came with the revelation of the DYT1 gene in 1997.

Dystonia as a Consequence of Childhood Abuse

While the historical perspective of dystonia has largely revolved around the organic and psychogenic debate, recent studies have begun to explore a new dimension – the potential role of adverse childhood experiences (ACEs) in the development of focal dystonia. This emerging avenue of research sheds light on the intricate interplay between psychological dispositions, stress regulation, and sensorimotor networks in the etiology of dystonia.

Contemporary investigations have revealed a multifaceted view of focal dystonias. On one hand, studies have linked dysfunctional cortical reorganization, a lack of motor inhibition, and abnormalities in cerebellum and basal ganglia circuitry to this condition. ACEs encompass various forms of abuse, neglect, and household dysfunction. These experiences are not only linked to increased health risk behaviors in adults but also to higher rates of various medical conditions, including ischemic heart disease, cancer, stroke, anxiety disorders, mood disorders, behavior disorders, substance abuse, personality disorders, and psychogenic movement disorders. ACEs are believed to foster perfectionism and anxiety. The social reaction model suggests that children exposed to trauma may exhibit perfectionistic behaviors as a coping mechanism, striving for flawless performance to regain control and affection lost in their tumultuous past.

On a neurobiological level, ACEs have been shown to influence stress networks in adults, affecting the regulation of the hypothalamic-pituitary-adrenal (HPA) axis. This can lead to a quicker assessment of stressful situations as “threatening,” resulting in the noradrenergic activation of the basolateral amygdala, which in turn promotes emotion-induced consolidation of dysfunctional movement patterns. This impacts movement learning and motor memory. Studies comparing individuals who have experienced adverse childhood events with those who have not have revealed alterations in brain areas including the motor cortex, prefrontal cortex, cerebellum, and the limbic system.

In light of these findings, it is plausible that adverse childhood experiences could play a role in the genesis of  focal dystonia. They may influence psychological dispositions, stress regulation, and sensorimotor networks. Such involvement could broaden our understanding of the classification of dystonia, suggesting that dystonia is not solely the result of motor circuit dysfunctions of the basal ganglia and the cerebellum, but also a manifestation of dysfunctional stress-coping mechanisms. Variations in the degree of involvement of emotional-memory pathways through the limbic system and frontal cortical areas could offer an explanation for the observed differences in symptom severity and expression among focal dystonia patients.

Structural differences in the corpus callosum and other structures in the brains of people affected by Dystonia have been identified in recent studies. The corpus callosum is a substantial bundle comprising more than 200 million myelinated nerve fibers that serve as a bridge between the two hemispheres of the brain, enabling communication between the right and left brain regions. Irregularities within the corpus callosum have been identified in cases involving maltreated children. In a study conducted by Teicher et al. (2004), the corpus callosum of children with a history of maltreatment was examined. The researchers uncovered that individuals who had experienced maltreatment exhibited a 17% reduction in the overall area of the corpus callosum when compared to a control group, and an 11% reduction when compared to psychiatric patients without a history of maltreatment.

The observed decrease in the size of the corpus callosum was found to be linked to early traumatic experiences, rather than diagnosed psychiatric conditions. Neglect appeared to have a more pronounced effect on the size of the corpus callosum in boys, whereas girls displayed the most notable reduction in corpus callosum size in cases involving sexual abuse. Researchers have proposed a potential explanation, suggesting that female subjects might be less reliant on receiving adequate early stimulation or attention than their male counterparts, which could render boys more vulnerable during their early developmental stages. In contrast, girls may experience vulnerability at a later stage in their development, as sexual abuse tends to occur during a more advanced developmental period compared to neglect.

This new perspective challenges us to consider the profound impact of early life experiences on the development of neurological conditions and underscores the importance of a holistic understanding of dystonia’s aetiology. As research in this area continues to evolve, it may pave the way for more comprehensive approaches to diagnosis, treatment, and support for individuals affected by dystonia.

Modern-Day Challenges

Today, as we stand on the cusp of advanced medical knowledge, fresh insights from functional imaging and neurophysiological studies are rekindling the debate on dystonia’s nature. The boundary between psychogenic and organic explanations has blurred, with emerging research suggesting that abnormalities in sensorimotor integration and cortical excitability may underlie dystonia’s causes.

In conclusion, dystonia’s journey from psychogenic assumptions to modern challenges has been a complex and enlightening one. It reflects the dynamic nature of medical understanding, highlighting the intricacies of distinguishing between psychological and organic factors in neurological disorders. As we continue to delve deeper, we inch closer to a more comprehensive grasp of dystonia and its place within the spectrum of neurological conditions.

Sensory Tricks and Dystonia. Why they work, why they help.

What are some examples of sensory tricks?

Can I use sensory stimulation indefinitely?

What tools on the Dystonia Recovery Platform can help restore proper function in weak dystonic muscle-nerve circuits?

If it makes you feel normal, it is probably fine to do

Your symptoms are real. The quest for a organic biomarker for Dystonia diagnosis

Is Dystonia hard to diagnose?

The patients’ struggle to obtain a proper diagnosis

Since the first symptoms start, patients struggle with the symptoms without knowing what has happened to them. This causes enormous stress, trying to cope with the deficits which make no sense to them. They normally try to fix the spasms going to massage, regular physical therapy, alcohol or marijuana. There is always a moment where one of the practitioners they visit, normally the physical therapist, will suggest that maybe the problem is neurological and it is then they will book an appointment with a neurologist.

Conventional diagnosis in 2023

Months later they will see a neurologist, a clinical examination will be performed, probably a structural MRI or an electromiography will be performed and dystonia diagnosis will be received – always accompanied by your doctor saying the MRI is fine and all the tests are normal, you have a primary or idiopathic dystonia (is due to unknown cause). The lack of a conclusive biological marker produces anxiety in the patient and family members, and also some doctors and other therapists can suggest that the problem is just stress, a form of psychogenic somatization or even a way to obtain a secondary gain. These assumptions often lead the patient to fall into depression, feeling that they are not only facing a very complex medical situation but also that they are alone in the process and cannot benefit from emotional and medical support.

Which treatment will be offered?

A treatment will follow mostly based on Botulinum toxin injections and medication, if the patient does not find relief, Deep brain stimulation will be posed as the option of choice. Unfortunately, the idea of following a neuro-rehabilitation protocol similar to the ones designed for patients affected by stroke will not even be considered as an option in most countries worldwide.

Dystonia Diagnosis Transformed: The Birth of DystoniaNet

A new groundbreaking development has emerged from the hallowed halls of Harvard University, specifically the Harvard Brain Science Initiative. Researchers Valeriani D and Simonyan K have paved the way for a new era in understanding dystonia with their creation, DystoniaNet. This 3D convolutional neural network harnesses the power of machine learning to reshape our approach to diagnosing dystonia.

The DystoniaNet Revolution

DystoniaNet represents a revolution in the realm of dystonia diagnosis, offering a fresh perspective and novel solutions to an age-old problem.

Exceptional Accuracy

One of the most astounding attributes of DystoniaNet is its unparalleled accuracy. By being meticulously trained and optimized on a dataset that encompassed 440 patients and controls, this innovative neural network achieved an astonishing accuracy rate of 98.8% in diagnosing dystonia across its various forms. This exceptional level of precision promises to significantly reduce the frequency of misdiagnoses, ensuring that patients receive prompt and accurate care.

Efficiency and Swiftness

DystoniaNet is not only remarkably accurate but also incredibly efficient and speedy. It operates at a pace that leaves traditional diagnostic methods in the dust, providing results in just a fraction of a second, averaging around 0.36 seconds. This swift diagnostic process not only accelerates patient care but also alleviates the anxiety associated with prolonged waiting times for results.

Interpretability and Discovery

DystoniaNet doesn’t stop at accuracy and efficiency; it offers a layer of interpretability that sets it apart. Through an analysis of its internal model, this neural network uncovered a novel data-driven biomarker for dystonia. This biomarker comprises specific brain regions, including the corpus callosum, anterior and posterior thalamic radiations, inferior fronto-occipital fasciculus, and inferior temporal gyri and superior orbital gyri. These regions have previously been identified as microstructurally abnormal in dystonia patients, but DystoniaNet made this discovery autonomously, illustrating its potential for groundbreaking insights and discoveries in the future.

A Promising Future for Dystonia Diagnosis

DystoniaNet’s potential knows no bounds. Its transformative capabilities hold the promise of reducing misdiagnosis rates and expediting the diagnostic process, thus ensuring timely treatment for dystonia patients. The visionary researchers behind DystoniaNet envision its implementation as a cloud-based platform in clinical settings. In this scenario, clinicians can upload a patient’s MRI, and within seconds, receive a precise diagnosis. This technological leap heralds a new era in the clinical management of dystonia.

 

 

We now have a biological marker and now what?

This new findings of microstructural markers in the brains of  patients affected by Dystonia is a very important milestone, now we know that the “your MRI showed that it is all fine” is not true. These new findings will help patients request further research and improved treatments. If structural changes in the brain have been identified, proper neuro-rehabilitation protocols have to be offered to patients as soon as possible after the diagnosis. We know that rehabilitation can lead to structural and functional changes in the brain Neuroplasticity offering a beacon of hope for Dystonia patients in the future, that starts today.

The Science of Dance and Movement in Dystonia Recovery

 

For instance someone with cervical dystonia would have an asymmetrical tonic neck reflex now uninhibited, making it difficult to turn their head to center. Similarly, someone with a hand dystonia can have the grasping reflex uninhibited, causing them difficulty when writing or playing an instrument.

Dance and movement can be medicine for patients affected by Dystonia

In many of the exercises I suggest are embedded both the primitive reflex and its opposite, continually performing these two therapeutic movements together, in small precisely performed daily doses over time, can help one of the aspects of dystonia, the movement irregularities. I say one of the aspects because as anyone with dystonia will tell you, their symptoms go way beyond spasms and tremors..

I also began to see a recurring theme with many of my clients. They felt ‘normal’ when dancing or doing an activity they loved. This shows that ‘normal movement’ is still available to the client but only at certain times, at other times the neural circuitry displays a weakness making the movement erratic or impossible. My goal was to create exercises within dances in which the therapeutic movements are repeated in a context that can be enjoyable too. Combining two aspects of positive reinforcement to strengthen the weakened neural circuitry.

Many of the professional dance instructors on the platform also have dystonia or have family members affected by Dystonia, every move has been precisely chosen to be therapeutic, but also to work well within the physical restrictions dystonia can temporarily cause. As the patient improves, their dances will become more fluid, with more range of motion. From dancing styles like Bollywood, disco, hip hop, African dance and belly-dance, there are dances to suit every taste. If dancing is restricted or undesirable, we’ve also created boxing, kung fu, Qi gong, yoga, among others, all to get our members moving and recovering at the same time.

Will any dance style work?

Although moving in general and working out are wonderful to improve overall health and dystonia too, free-style dancing or other forms of dancing will not contain these therapeutic moves. You also run the risk of aggravating your dystonic area by asking for movements your body simply doesn’t have strong enough neural circuitry to sustain, which would then force the brain to recruit other muscles to do the moves requested, compensatory muscles which can lead to prolonged pain and can delay recovery efforts.

The dance choreographies on the platform along with the instruction given on how to perform, will also prevent the patient from overdoing a good thing. One tip I have for those who do their own style of dance or working out — if you feel spasms increase during or after the activity, you are doing too much – but if you feel better with freer movement during and after the activity, it is probably good, could be strengthening some neural connections and you should continue. The exception being, until you have recovered more neural strength to the dystonic muscle, it is best not to workout your dystonic area, for example upper body weights for someone with neck dystonia or running for someone with leg dystonia. Having said that, it still can depend on the physicality of the client and the intensity of their dystonia, but if you want to play it safe, you may want to put aside these intense workouts for some months while you focus on the recovery exercises.

So all I have to do is therapeutic dance and my dystonia will be gone?

After 25+ years treating clients, I have found a multi-faceted approach helps best. Dancing is just one of the approaches. Others include eye exercises (most don’t realise that dystonia affects the eyes in almost every single client), therapeutic music (to help with brain synchronisation, dysregulated in clients), movement exercises (a more sustained and slow exercise for each dystonic area), meditations and relaxation techniques (as those with dystonia have an imbalance in the autonomic nervous system, causing an over-activation of the reactive response). It’s this approach from many angles which takes into consideration the fact that dystonia is a full body condition, that will bring each client their best opportunity to recover lost function, physically, cognitively and emotionally.

Were you predisposed to have dystonia? Understanding the patients’ neuropsychological profile

Balance/vision/posture and their connection with dystonia symptoms

The eyes often start and stop Dystonia spasms in the neck, and the eyelids

Different studies have shown that patients affected by Dystonia do not present proper eye function.  Neck muscles can be activated in response to eye movements and involuntary eyelid closure can be associated to eye movement disorders. Vestibular and visual symptoms in Dystonia are normally overlooked by physicians and rarely treated.  It is very important to treat these symptoms, even when they appear subtle, because they are in many cases responsible for the most debilitating symptoms of the condition.

About 30% of dystonia spasms may be due to muscular and postural corrections performed by the brain trying to see properly or avoid dizziness.  In many cases the patient is not even aware they have eye or balance issues, as the brain has been compensating for the issues underneath the conscious radar of the patient.  It is for these reasons the Dystonia Recovery Program has a  comprehensive eye exercises program for Dystonia and balance and Vestibular training to improve these deficits, so the patient can remove or diminish one area that factors in to the totality of their dystonic symptoms.

How can  balance and vision symptoms of Dystonia be corrected

Interestingly solving the minor visual impairments in Dystonia can help patients to walk again and have less limitations in their daily life, enjoying having more energy and stamina during the day.

The eye tracking and restrictions of the movement of the eyeballs (Nystagmus) that the patients present, in most cases can be corrected with a few months of well designed Eye exercises program for Dystonia.

 

Once that the eyeball has restored proper function, less tension in the neck is expected, less migraines, reduced vertigo and or dizziness and better balance.

This is the moment when the patient needs to start a Balance exercises program for Dystonia (Vestibular rehabilitation therapy).

The brain’s quest to determine the Visual Horizon. The important of Balance training in Dystonia

Dystonia alters the balance between the right and left eye, between the left and right side of the body, and between the right and left ear altering proper posture and balance. Patients affected by Dystonia normally have difficulty to process and discriminate the inputs coming from the left and the right side of the body making it difficult to adjust their movements while walking or standing. Engaging in targeted balance training holds immense promise for people dealing with dystonia, offering a pathway to enhance posture and restore equilibrium. Through focused exercises, individuals can reclaim control over their body’s balance, fostering improvements in both physical stability and overall well-being.

Conclusion

In a nutshell, due to dystonia the brain is finding it difficult to know where the true horizon is, the world seems like it has tilted so we tilt to find again the horizontal line, creating additional muscle contractions and changes in posture. The brain in dystonia can create spasms to correct vision, hearing or balance. This is why it is so important to improve vision and balance to recover.